May 29, 2008

DTRF.



My mother-in-law is the kind of person that makes things happen. If you saw her ward choir in action, you'd really get it. Tonight is going to be a perfect example of her ability to draw people together to create something wonderful. We are lucky to be attending a fundraising gala for a foundation that Jeanne created. I'm excited to get dressed up & pretty, but more excited about what the night really represents.

While Mike was on his mission in Bolivia in 2001, Jeanne was diagnosed with a Desmoid tumor. I don't know a lot of details about the ensuing few years, but do know that the last few have included multiple surgeries, two full years of chemo & I'm sure a lot of not-so-fun days whose details we were spared. I don't think I've ever heard Jeanne complain, really, about anything. She has actually done the polar opposite in response to her diagnosis. By the time I entered the Whiting Family Scene around 2003/2004, she was busy working to make things happen. Given the lack of research on desmoid tumors, she decided to change that herself & established the Desmoid Tumor Research Foundation. Read this from its website:

The Desmoid Tumor Research Foundation (DTRF)* was founded in September, 2005, by Jeanne Whiting and Marlene Portnoy. Shortly thereafter, Charisse Litchman, MD, joined the executive committee and assumed the position of Chair of the Scientific Advisory Board. Each has a personal connection to this rare disease, either in themselves or a loved one, which motivates them to aggressively accelerate the search for a cure.

Through personal experience, they became acutely aware that there are few desmoid tumor treatments that are only sporadically effective. Desmoid tumors had been largely ignored in the cancer research field and there was a lack of information available to patients and their families about the disease. They were determined to change this situation by combining their backgrounds in medicine, law, fundraising and marketing. They have a deep sense of urgency in this cause and press forward to fund cutting-edge research that will develop new effective therapies for desmoid tumors, leading to the ultimate goal -- a cure!

The Desmoid Tumor Research Foundation (DTRF)

• is the only organization in the world dedicated to funding desmoid tumor research and finding a cure for this rare and devastating disease
• has jump started desmoid tumor research and has already awarded seven research grants, funding significant multi-year desmoid tumor research projects at four major cancer research institutions: Stanford University, MD Anderson Cancer Center, Huntsman Cancer Center and The Hospital for Sick Children
• has compiled a Scientific Advisory Board of the world's top desmoid tumor experts and is facilitating the collaboration of researchers in establishing research priorities
• has established an annual desmoid tumor symposium bringing patients, physicians and researchers together from around the world for education, support and collaboration
DTRF.org, has become a clearinghouse of information on desmoid tumors and research, reaching physicians, researchers and patients around the world

It's just all inspiring, really, that one person {along with the help of good & brilliant people} could create such change & progress. If you read Jeanne's bio, you get why she has been successful. I really respect her, I'm really proud of her, & really happy that Mike & I get to go support her tonight.

6 comments:

Jan said...

I am in awe of what Jeanne has done. She is one of those powerful women who really do change the world, one good deed at a time. Please give her my very best when you go to the gala tonight. Tell her I am so proud of her!

Lindsey said...

Amazing. And completely inspiring. Have a great time at the gala. It's sure to be a success.

Missy said...

This is really incredible. To start something that big from the ground up, being the founder. Congrats to your mother-in-law on all accounts.

Are you wearing that dress?

Melissa said...

She sounds AMAZING! All that she has done is very inspiring! Have fun tonight!

k. said...

Missy, I wish that was my dress (with little cap sleeves)! :) I wore a slightly-less-fancy black dress that I picked up while I was in San Francisco.

Tara Edwards said...

I'm always amazed at what someone can do if they just commit to doing their best and working hard. There are so many people who go around living off the work of other people and making excuses for not being involved in making the wold a better place. She's pretty amazing!